Eric: 40 Years Living with CRPS — Choosing Life Over Limb (Part 1)
Content Note: This story discusses amputation and medical trauma. Please take care while reading.
Eric was diagnosed with Complex Regional Pain Syndrome in 1987 at Massachusetts General Hospital. Over the course of nearly four decades, he endured countless procedures, setbacks, and unimaginable pain. This is his story of survival, strength, and ultimately, choosing life.
Chapter 1 (Part 1): The Accident + Diagnosis
The Accident
The purpose of this is to share my personal story (journey) of developing complex regional pain syndrome (CRPS), and how it changed my life in many ways. In the process, I became so involved in advocating for others suffering from this painful and unrelenting chronic pain syndrome.
My CRPS, formerly known as reflex sympathetic dystrophy (RSD), started on December 7, 1985, after a car accident. I was 20-years old then. I was two months shy of my 21st birthday. It was a Friday night, and a classmate from high school had stopped by my parent’s house. It was around 10:00 pm when my friend showed up. He asked me if I wanted to go hang out with him and his girlfriend. Since I was young and had nothing to do on a Friday night, I decided to go for a ride. Little did I know that taking that ride would change my life forever.
I remember that night like it was yesterday. It was a cold December night; we had a little dusting of snow on the ground enough to make the car slide a little while driving. We had about a 30- minute drive from my parent’s house to my friends’ girlfriend's house. We were not too far from our destination, when all of a sudden, I noticed that the driver started to speed up. He was doing about 55-mph in a 25-mph zone. Before I knew what was going on the car went off the road, and we hit a rock monument on my side of the car. Before the impact, I braced myself. I pushed my left foot into the floorboard. At impact, I felt an electrical jolt travel up my left leg, and I heard and felt a pop in my lower back. I also hit my shoulder on the dashboard and hit my head on the windshield. I was knocked out for a minute from hitting my head on the windshield. When I came too, I noticed the driver was knocked out, big time! He had hit his head on the steering wheel. There was blood everywhere.
When the EMT’s showed up at the scene, I remember trying to get out of the car. I was unable to do that since the passenger side door was crushed in. So, the EMT had to pull me out of the car over the driver who was still knocked out. The EMT placed me in the back seat of the car. The impact of the crash was so bad that it threw my glasses into the back seat. I was lucky to find them.
While the EMT was placing me on a stretcher, he asked me if I was in any pain. At that time, I only had a little pain. He said to me “wait until you wake up in the morning you will feel the pain.” Boy! He was right! I was in so much pain. Little did I know that the pain in my foot and leg was CRPS.
While I was in the ER I was asked by the nurse if I knew how many drinks my friend had that night? She informed me that he was over the legal drinking limit. I know my friend was a heavy drinker at times. The only thing I knew was what he told me. He said he had a lot of drinks at lunchtime and after work. He was the type that could drink a lot and still function in life. When he arrived at my parent’s house, he seemed fine. I guess that the amount of alcohol that was still in his system made him pass out while he was driving. The irony is that I did not have any drinks that night. Maybe if I did my body would have been more relaxed and maybe I would have not been as hurt as I was. My friend only got some stitches in his head. I got a lifetime worth of pain.
My Diagnosis
After I was released from the emergency room, I went home to sleep it off. I remember waking up in so much pain. I had to wait to see my Orthopedic doctor on Monday morning. The only thing this doctor did for me was to refer me to physical therapy and told me to see him in three weeks. This treatment went on for about six months. As time went on, my pain got worse.
After six months of not receiving any help from this Orthopedic doctor. I went to seek answers from other doctors, such as other Orthopedic doctors, and Neurologists. I must have seen over 20-30 doctors over a two-and-a-half-year span. No one could give me an answer to my pain problem. I remember some doctors telling me the pain was all in my head. I am sure many CRPS patients have heard the same line from a few doctors.
In the late spring/early summer of 1987, I went to see a Vascular doctor at the Mass General Hospital (MGH) in Boston, Massachusetts. Doctor D.B., performed a few vascular tests on my left foot and leg. He came to the conclusion that I might have RSD (back then they called it RSD, not CRPS) He then recommended that I make an appointment to see a pain specialist, Doctor D.C. also from the MGH pain clinic to see if I was suffering from RSD. I went to see Doctor D.C. for my first nerve block to help confirm the diagnosis of RSD. The results of the nerve block did confirm I had RSD-CRPS. Thank you, Doctor D.C. and Doctor D.B.! I was finally diagnosed with CRPS. I finally got a name for what was causing my pain. I remember talking with my parents, we all said RSD? What the hell is that? Well, we got a crash course on what RSD-CRPS was. I was finally on the right path to learning what RSD-CRPS was and what life had in store for me….
After being diagnosed by Doctor D.C., he requested that I obtain all my medical records from the Orthopedic doctor that I first saw after my accident. After receiving my medical records from the doctor, my parents and I started to read through the records. It came to our surprise that this doctor wrote in his last note before he released me from his care that I had a mild case of RSD. Wow! We were all shocked that he never said anything to me.
What gets me upset is he never informed me of my diagnosis. I wish he would have said to me “hey Eric, I think you have this condition called RSD, but I do not know a lot about it." He could have said “Eric, I can either refer you to someone who treats the condition, or you can pursue another doctor who can help you.” That never happened! It would have been nice to have known what I had, and maybe get some early treatment to help try to place this pain into remission.
After my diagnosis, I started to do research on RSD/CRPS to help educate myself. I spent countless hours in the medical library in my local area to find medical articles on RSD. Over time, I amassed hundreds of medical articles on this awful condition. I also started to search for others who suffered from CRPS. I remember finding a young woman near my age who lived in the same city that I did. After meeting and talking with her, I found out that we saw the same doctor. She, like me, had CRPS in her left leg. She was also misdiagnosed by the same doctor. She also went searching for years for a proper diagnosis too. In addition, she found in her medical records that the doctor noted she had a mild case of RSD, but he never informed her. Nice doctor! It’s sad that he knew the diagnosis and never said anything to either of us.